The Case

An 8-year-old child, born male who identified as and expressed externally (eg, clothing, haircut, behavior) as a girl, presented for a new patient appointment. The patient’s mother, aware that her child’s preferred name was not consistent with her legal name and sex, had alerted the clinic of the child’s preferred name at the time of making the appointment. When the patient and her mother arrived for the clinic visit, the medical staff was unaware of the registration documentation regarding the patient’s preferred name and called for the patient in the waiting room using her legal (masculine) name.

The mother and child felt embarrassed and humiliated by this course of events. Both were visibly upset and the provider had to spend additional time during the clinical visit addressing the emotional impact of inappropriately calling this patient a masculine name. The clinic staff had received prior training in addressing transgender and gender-variant people by their preferred names but had not developed communication processes to best convey this information.

The clinician acknowledged the error when it occurred, apologized for the harm done, and reassured both mother and child that it was not the intention of the clinic to have the child feel her identity was questioned or undermined. The provider suggested that the parent contact the ombudsperson’s office directly to comment specifically on what was done well at that visit and what specific behaviors could be improved in the future care of her child. The patient’s mother did just that.

The Commentary

Gender identity is a person’s private sense of one’s own gender. Gender expression refers to how a person expresses one’s gender identity—it is illustrated through one’s external characteristics and behaviors. Gender variance is gender expression that does not conform to dominant gender norms of male and female.1 In the medical community, gender identity disorder (GID) or gender dysphoria are the formal terms used to describe individuals who experience discontent with the sex they were assigned at birth and/or the gender roles associated with that sex. This term is less than ideal, but a formal diagnosis may be required for medical care and conveys that this is a medical condition and not the individual’s choice. Affected individuals are often called transgender.

Unfortunately, this case describes a common experience for transgender individuals, who often report acute discomfort when addressed according to a gender that is discordant with their self-identity. When use of the incorrect name/pronoun occur in healthcare settings, patients report lower satisfaction and are less likely to continue to seek care at that setting.2,3

We lack precise estimates for the incidence of gender variance, for several reasons. First, there is no routine surveillance of gender minorities in the United States. Moreover, transgender individuals often do not disclose their gender identity because of stigma and risk of harassment. The National Center for Transgender Equality estimates that between 0.25% to 1% of the population is transgender.4 A recent study that drew from four national and 2 state-level population-based surveys suggests that there are nearly 700,000 transgender individuals in the United States.5 The classic estimate for prevalence of GID comes from the 1994 DSM-IV, which reported 1:30,000 natal males and 1:100,000 natal females as transgender.6

Discrimination
Transgender individuals experience increased rates of discrimination, violence, and harassment.7-9 Of importance, transgender populations face discrimination and harassment across a variety of critical social settings, including schools, workplaces, and healthcare systems.10 Significant discrimination in healthcare settings may lead patients to avoid health- care settings and delay seeking needed care.

Lack of access to healthcare
Transgender populations experience specific challenges with the healthcare system. The clearest and most troubling patient safety issue for transgender individuals is refusal of medical care. In one survey of transgender adults, participants reported that when they were sick or injured, they postponed medical care because of discrimination or inability to afford it. Respondents described serious hurdles to accessing healthcare, including refusal of care and harassment in medical settings. In addition, the majority of US health insurers do not cover hormone replacement therapy or sexual reassignment services.11

Health system barriers for transgender individuals include problems with identification forms (eg, driver’s license or health insurance card) that indicate assigned rather than preferred gender, a lack of a systematic approach by hospitals and clinics to collect current gender and preferred pronoun, and limited access to gender-neutral bathrooms. A national survey found that of those who presented identification that did not match their gender identity in healthcare settings, 40% reported being harassed, 3% reported being attacked or assaulted, and 15% reported being asked to leave.12

Health risks
Transgender individuals are not only a vulnerable and underserved part of the community, but they are also at increased risk for a number of issues. Lack of awareness about gender identity exacerbates family and societal rejection and stigmatization. Unfortunately, this leads to self-harming behaviors. Transgender communities in the United States are among the groups at highest risk for human immunodeficiency virus (HIV) infection.13 In 2009, the rate of newly identified HIV infection was 2.6% among transgender persons, compared with 0.9% for men and 0.3% for women.14 Similarly, there are higher rates of drug use,12 homelessness,15 depression, and suicide among transgender populations. One in 5 transgender people in the United States have been refused a home or apartment, and more than 1 in 10 have been evicted because of their gender identity.15 A survey of San Francisco youth found that one-third of transgender youth have attempted suicide16 and a recent national report revealed that 41% of transgender adults have attempted suicide.12

Transitioning
“Transitioning” refers to the process of using hormonal and/or surgical treatment to align preferred gender with appearance. Transitioning transgender individuals face a number of patient safety issues. Non-prescribed hormone use (“street hormones” such as estradiol and esterified, available under various trade names) is widespread throughout the United States; the prevalence of non-prescribed hormone use ranges from 30% to 71%.13,17-19 These findings are worrisome because non-prescribed hormone users may be at increased risk for health problems resulting from improper dosing and a lack of monitoring. Adverse effects include hormone-related cancers20 and increased weight, decreased insulin sensitivity, poor lipid profile, and elevated hematocrit levels, raising concerns for cardiac and thromboembolic events.21

Recommendations

Patients should be able to identify sex at birth, current gender identity, and preferred gender pronoun separately during healthcare intake.22 Staff should also be routinely trained, and clear communication across different providers and sites within a health system should be encouraged to address patients respectfully and in accordance with their wishes. In addition to addressing patients by their preferred name/pronoun, if a patient’s gender is unclear, using gender-neutral phrasing such as “your next patient is here” is a suggested strategy. Allowing individuals to use the bathroom of the gender with which they identify is also recommended.

Best practices specific to electronic health records (EHRs) were developed by the World Professional Association for Transgender Health EMR Working Group.23 These recommendations included (1) preferred name, gender identity, and pronoun preference should be incorporated as structured demographic variables within the EHR; (2) the EHR should include an inventory of a patient’s medical transition history and current anatomy; (3) the EHR system should allow a smooth transition from one listed name, anatomical inventory, and/or sex to another, without affecting the integrity of the remainder of the patient’s record; and (4) the EHR system should alert providers and clinic staff of a patient’s preferred name and/or pronoun.

An area of particular confusion for many providers is prevention screening in transgender patients. In general, transgender persons who have not undergone gender-affirmative surgeries or used hormonal therapy should be screened according to the guidelines established for their birth sex. However, for those patients who have undergone surgery or hormonal treatments, screening recommendations must be modified. A great starting point for providers is the UCSF Center of Excellence for Transgender Health’s Web site. This site provides information for those interested in learning more about general prevention and screening for transgender patients. It includes a section emphasizing the areas of special consideration in which transgender-related medical treatments may have an impact on a patient’s well-being.22

Guiding principles in caring for transgender populations are compassion and respect for the patient’s expressed gender identity. Specific best practices include co-location of mental health services, peer support, and clinician training in transgender and gender-variant health issues.

Disclosure

Dr Sarkar has declared that neither she, nor any immediate member of her family, has a financial arrangement or other relationship with the manufacturers of any commercial products discussed in this continuing medical education activity. In addition, the commentary does not include information regarding investigational or off-label use of pharmaceutical products or medical devices.

Center of Excellence for Transgender Health. Primary care protocol for transgender patient care. San Francisco, CA: University of California, San Francisco, Department of Family and Community Medicine; April 2011.